Monday, August 23, 2010

This is About My Daughter

I am a writer. I have the journals kept since I was 8 to prove it. Somewhere I have ribbons from 2nd grade for short stories. I have a lovingly mounted degree on the wall. And I don't need ANY of those things. I may not get paid for this; I do it out of compulsion and passion. It's not just a hobby. It's an identity.

Time and again, I come to a point, where the frustration and sadness and overwhelming urge to spit in Fate's eye boil up and out and the only thing THE. ONLY. THING. I can do is write it out of my head and into the world.

This is one of those times.

I'd debated writing about this, because while I have absolutely ZERO problem telling all y'all about my Nearly Fatal Monthly Cramps, or how Tramalamadingdongs trigger awful migraines or how I fell completely off the bed while reaching for sheets the other night (I totally DID, and it was HIGHlarious), there ARE things in my life that are sacred.

Not many, but a few.

My kids are sacred. My kids are why I gave up my job. (True story.) Why I get up every single morning and pull through another Groundhog's Day. They are the reason I try to show them the bright side of life, even when I can't find it. They are the very, very BEST of their dad and me. Period.

I didn't want to write anything that would ever come to haunt my kids, or make them duck their heads in shame. (That's what the teen years are for.) Hopefully though, my kids will know that anything I've ever said or written is done with love. Because that's all I have for them, ever.

This is about my daughter.

Four months ago, we noticed a spot on her scalp where there was some missing hair. I was sure that her brother had pulled it out. They rough-house a lot and he's been known to yank hair, just like she's been known to throw punches. They're kids, and honestly, they're better friends than most siblings I see.

My husband saw it and said he thought it was something different, not just hair loss from her brother yanking it out. I was hoping it was, because frankly, any alternative didn't comfort me; but he was right. Our pediatrician confirmed it a few days later; she diagnosed my daughter with alopecia areata. Basically, it's an autoimmune disorder in which her system mistakenly, and for no known medical reason, attacks her hair follicles, and the hair becomes damaged and falls out.

There is no cure, there are only treatments. And yes, there are versions that encompass the entire head of hair, or even all the hair on the body. And no, there is no way to predict what's going to happen.

We have been to the dermatologist (the specialists for this disorder) and she's had several sessions of cortizone shots, right in her scalp. She's been a total trooper each time, telling me she wants her hair to come back. And I do too.

The dermatologist said that most cases resolve successfully and never experience more hair loss. A lot of kids have this. Our pediatrician said it's not uncommon.

And I don't care.

I don't care about statistics, or odds are, or theories. I don't care about ongoing research, or genetic possibilities. There are no cures. There are only treatments.

No, this isn't life threatening. I've read posts where parents gush about how LUCKY their child is to have alopecia and not cancer, like some kids. I refuse to be grateful for an autoimmune disorder that is stealing my daughter's self confidence. There is always, always, always someone worse off out there.

I count my blessings every day, thank you very much, but this condition is not one of them. I want to punch this disorder in the FACE.

My daughter is amazingly bright, empathetic, and full of all the pink-loving, princess-admiring, bedazzling girlishness that I never embodied as a kid. For a girl who loves wearing dresses and finding new hair accessories, this sucks.

And she's smart. And she knows. And she's afraid.

And I can't FIX IT. I can't EVERLOVING fix this thing. I have to hold her hand, and apply medicine and tell her that yes, the doctor is probably going to use that needle again and I can't even answer her one question: Mommy, when is my hair coming back?

And I'd make a deal with God if life worked that way. And God knows, I've tried. I'd shave off every bit of my waist-length hair TODAY; I would give up what she wants so badly, if only her hair would grow back. If only we knew she wouldn't lose even more. I would grab The Man's beard trimmer and buzz my head, then pick out a hot pink do'rag with "Alopecia Sucks" bedazzled in purple sequins.

She's going to school in two weeks, and I know, dear God how I know that kids aren't just mean, they are CRUEL sometimes like cruelty is a contact SPORT that they hope will pay for college. I can't be there, I can't draw up all my maternal fury and stop it, I can only hope that the school we chose will live up to their reputation of having character count as much as curriculum.

The only time I've ever been happy that Hannah Montana exists is when I used her as an example of someone cool who wears a wig; this, after my Princess told me that if she lost all her hair she'd be bald, and have to wear a wig. This, when we were both crying.

Most days, I'm pretty okay - I have never been anyone that others felt compelled to rescue. I've always picked myself up, dusted myself off and gotten. it. done. But even bad ass mommies have a point. Like when her hair parts and the light hits her scalp in the spot that I pray is not getting any bigger. This damnable disease that I can't help but feel stupidly responsible for (it's been linked to family history of asthma), even though I know that I had nothing to do with it and I might as well blame myself for a hurricane in Puerto Rico because I sneezed two months ago.

I know it's not my fault, but if it were my fault, I could fix it. I WANT to fix it. I cannot fix it.

I can only show her that no matter what, I am here. We are here. I will never give up on helping her, even if I can't cure her. Even if someone at school says something mean. Even if she gets worried when she looks in the mirror.

I've talked to the dermatologist and the pediatrician, and I get the same answers. The answers that, in fact, are NOT answers. They don't know what triggers it, but and I quote, "there is no empirical medical evidence that suggests diet or environment play a part" so no one will recommend allergy testing.

I've spent hours on the internet; last week I waded through an article written by a dermatologist obviously for other medical professionals and so steeped in jargon and research information that I was in a cold sweat by the time I finished. The conclusion? They just don't know why it happens. Even when they isolated immune cells attacking the hair and stopped that, NOT ALL lab rats experienced hair growth, thus "suggesting another factor or factors at work."

What the medical profession DOESN'T know about this would fill a book. And since it isn't life threatening, I'm sure that research dollars are scarce. But it's life QUALITY threatening. Read the stories HERE and you can see just how devastating this disorder can be, and how much it can damage a person's image and confidence.

But I will take this as a call to arms. I will treat our Western medical system with the skepticism I feel it deserves, after a lifetime of my own experience. I was misdiagnosed with various respiratory problems until ONE doctor told me I had asthma at age NINETEEN! I'd suffered more than half my life by that point, and I finally could get the treatment I needed. My father had to leave this state in order to receive the correct medical care for a condition he had. My mother received three separate operations because the doctor performed the first two the wrong way. Science is like anything else: truth is subjective and varies with new discoveries. They know what they know until they don't.

Somewhere out there is the answer to this disease. I may not find it, but I will never give up on finding someone with a better answer. I will do anything I can to make my girl's life better.

I will never, EVER, give up. And if I know my Princess, neither will she. And she will always, ALWAYS be beautiful.

Comments, questions, ...?


Anonymous said...

Thank you for sharing. Vanessa is in my prayers daily.

Anonymous said...

Our children are our angels. There are families that are dealing with cancer or early death in their kids. I cant even imagine that. This might seem small in comparison, but she is my rose. When i see it i see all the potential negative impact she will endure in a lifetime, i don't understand why bad things have to happen to innocent children.

Sammo said...

Thank you for the comments; both here and in my email. Such positive energy is a powerful force! You ALL are the reason I write - because I always get more than I give, and I never forget it. And yes, The Man, she'll always be your rose. <3